Is anyone using Rytary?

Yes I am still taking Rytary and it has really helped my off time. I will see my Neurologist on Wednesday for my every 4 month check in. My question to him will be: Why do I have such a good "on time" after taking my morning dosage but my afternoon dosage which is the same doesn't give me the same energy lift? I take 3 capsules 8 hours apart beginning at 6:00 am, then 2:00 pm and then at bedtime 9:30 pm.

That is an interesting question for your doctor, @tllaes. I would be interested in the answer as well. I'm not a medical professional but just wondering if Rytary lowers blood pressure as other PD medicines do. If that it the case, then the lower energy might be from the lowered BP after the second dose? It might be worth asking about.

I'm wondering if @dianalee has an opinion about that?

If you are comfortable doing so, @tllaes, I would like to hear what your doctor has to say about the lowered energy.

Blood pressure hasn't been a problem. After seeing the Doctor he has me increasing my dosage by one more capsule every 8 hours. I will do it over a 3 week period. I started on Thanksgiving taking 4 at bedtime, then one week later 4 at 6:00am when I get up and this Thursday I will take 4 at 2:00 pm. So far so good and I can feel more energy during the day and no side effects.

That is great, @tllaes, feeling more energy and no side-effects is wonderful! I appreciate your checking in and letting me know of your progress.

<p>Rytary Dose? I take 3 pills 4 times daily. 48.75-195 mg ,</p><p>I was great for a long time, then I lost 50 pounds. since then I have Dyskansias almost daily and depression and mood extremes. Does anyone have similar reactions? My neuro wants me to have DBS which is A choice but could I just need a dose change?</p>

Have you asked for a higher Mg formula for Rytary as you are on the lowest? Weight lost might not be due to Rytary. What does the Neurologist think?

Hello @aspendon and welcome to Mayo Connect's Parkinson's discussion group. It is good to have you join us!

I'm sorry to hear that you are having problems with weight loss, dyskinesia, and depression. That is certainly a difficult combination of problems.

You do not state how long you have had Parkinson's, nor how long you have been taking Rytary. That information might be helpful. I understand what @tllaes is saying that discussing the dosage of meds with your doctor might be helpful.

On WebMD's website, there is a list of side effects of Rytary and some of the side effects you mentioned are listed. Here is the link to that article for you to read, https://www.webmd.com/drugs/2/drug-167580/rytary-oral/details/list-sideeffects.

Other than DBS, what other options has your doctor suggested? How long have you had PD?

Who or where does one call or email for the connection with the PAN Foundation to get Rytary with no out of pocket $$$? It is very expensive; just paid $367. for 30 days for a regimen of 4 MG95 capsules (I'm in the doughnut hole right now, and will be paying $1,100. per 90-day period. Right now my neurologist is touting its benefits, buy so far (after 8 weeks, or so, on the drug) I am feeling so-so,only.

Hello @hjscheib and welcome to Mayo Clinic Connect's Parkinson's discussion group. You asked how to contact the PAN Foundation for help with medication costs. Here is their website, https://www.panfoundation.org/.

If you are comfortable sharing more: how long ago were you diagnosed with PD? Have you tried other meds before Rytary? What is the most difficult symptom you are now experiencing?

I understand that Rytary is quite expensive. You mentioned that after 8 weeks on Rytary you are just feeling "so-so." Did your doctor mention how long you needed to use it before you would be aware of any improvement?

Thanks for the Pan Foundation website. I will get in touch with them to find out if I can find some cost support for Rydary. I posted my costs in the previous response. I've been a PD patient now for exactly 6 years on August 15th. I have been taking carbidopa/levodopa, 25-100 mg tabs, 2 per dose, 3 times per day, coupled with Azilect (rasagilene,
mg, for "blocking" the development of the disease and reducing the PD symptoms; and venlafaxine, 225 mg, dose per .day